The tale of: a parasite infection of my body and brain; how "friends," family, and medical professionals helped contribute to it largely destroying my life; and (reflections on) what I've done and has happened to me since then.

Tuesday, February 18, 2014

Not giving up, and giving forward

My most recent post in this blog was about a powerful book -- Brain on Fire: My Month of Madness -- detailing Susannah Cahalan's long quest to overcome multiple, terrible misidiagnoses by healthcare professionals. Since that post, I've read two more books of relevance to this: one very similar, one (seemingly) very different.

As with Susannah's experience, so much of Becky's experience of her illness and the healthcare system was similar to mine. In Brain Wreck, Becky does a particularly good job at revealing her private thoughts along her journey. Some that particularly resonated with my thoughts along my journey:

- her reaction of shock and disbelief to the initial diagnosis -- "dumbfounded," and its ramifications:

o "the embarrassment and shame associated with each time the doctors told me 'it's all in your head.' Since then, I approached doctors cautiously, afraid they would dismiss me."

o "I refused to go back to the hospital, in fear of being treated like a mental case."

- "My neurological challenges made me think life was ending ... and quickly."

- her frustration and worry:

o "I'm tired of wondering what's wrong with me. Wondering if I'll ever get answers that make sense."

o "It shouldn't have been this way. It shouldn't have been such a struggle."

o "Scares me that it could happen again. I live in fear that if it happens again, it will be with greater intensity or consequence."

- on meeting others who had similar experiences: "Oh my gosh. I've met my new family. These people totally get me. The experience of meeting other survivors is healing. Motivating. Less isolating."

The final chapter of the book includes an exploration of why doctors misdiagnosed her for so long. She explains that unless doctors have seen her disease in practice, the text book detailing it is long forgotten, too rare to be on their radars. Also, many patients are misdiagnosed, because the symptoms can be attributed to another diagnosis; doctors stop searching for a diagnosis when they find something that seemingly fits. Or as she stated earlier in the book: "(the doctor) treated me like a head case when he couldn't figure it out."

The final chapter also includes "20 Lessons I Learned the Hard Way." Here is a subset:

"1. Trust your gut: You're the only one who knows how you really feel. Even if you can't put a finger on it. Honor yourself by listening to what your body tells you.

2. Be your own advocate: You are the only one managing your healthcare. Even when you run across the medical professionals who have a strong interest in helping you find answers, it's still up to you to take the next steps or to seek additional answers until one fits. You are not their responsibility. You are your responsibility.

4. No one knows everything - not even doctors.

6. Join an online support group: I can't emphasize enough the healing aspect of interacting with others with similar health issues as you.

9. Track symptoms.

11. Prepare questions in advance: Organize questions in order of importance. Tick them off the list as you and your doctor talk through your condition. Don't be afraid to speak up if they aren't all answered.

14. Learn to say 'no'.

15. Take notes: It's your medical appointment. You are paying for it. And you deserve the benefit of notes to refer to later to better absorb the information once your emotional distress has declined."

Embedded in the book is the gripping story of Scott's 3+ year inability to speak aloud to other people. No doctor was able to help him, and he, like Becky, suffered through multiple misdiagnoses, the first (again) of which was that he had mental problems. Scott refused to give up.

What was he to do? "...how could I find a name for a condition that was unfamiliar to two ear-nose-throat doctors, two voice specialists, a psychologist, a neurologist, and my general practitioner? There was only one creature smarter than all of those doctors put together: the Internet."

Scott used the Internet and succeeded in identifying his condition, which enabled him to find a doctor who knew the condition. He made an appointment.

"Within ten seconds of opening my mouth in her office, the doctor confirmed the diagnosis. I had a classic case.

'What's the cure?' I whispered.

'There is none' she replied.

But that isn't what I heard. The optimist in me translated the gloomy news as 'Scott, you will be the first person in the world to be cured of spasmodic dysphonia.' And I decided that after I cured myself, somehow, some way, I would spread the word to others. I wouldn't be satisfied simply escaping from my prison of silence; I was planning to escape, free the other inmates, shoot the warden, and burn down the prison.

Sometimes I get that way."

(An increasing number of patients with poor experiences of the healthcare system seem to get that way.)